Former Archbishop of Canterbury, Lord Carey has decided to make public his views on the creation of three parent embryos. Or, more specifically, to make public his views on anyone who has the temerity to oppose their creation.

These new, treatments will, he assures us, end great suffering and the scientists behind it are trustworthy, responsible, caring and compassionate. In contrast, opponents are irrelevant flat-earthers, trapped in both fear and doubt about medical advances.

Carey’s opinion may not come as a surprise for those who remember his volte face on assisted suicide, but his views on this issue are equally unconvincing and disappointing.

Carey claims: ‘The truth is that in spite of a few reservations about whether hereditary characteristics would be affected by the technique, there are absolutely no grounds for opposition.’ (my emphasis).

Actually, the truth is, if he had done a little bit of reading and research, he would soon find that there are many scientists, ethicists, journalists, medical ethics councils and politicians around the world who oppose these techniques for a host of good reasons. Let me help him with a few:

‘The greater part of the scientific community maintain that the scientific data currently available is insufficient to even consider intervention on human subjects, and there cannot therefore be any guarantee for the safety of any eventual off-spring’.

In other words, these techniques are completely experimental and there is an equal or arguably greater chance that they will tragically produce worse disorders, or early death.

Dr Paul Knoepfler, who is a little more qualified than Lord Carey to speak about the science (as Associate Professor at UC Davis School of Medicine, and a stem cell and developmenta lbiology researcher) has warned the UK that developmentally disabled or deceased babies will likely be produced, based on past experiences and research:

‘Even if hypothetically this technology might help avoid some people from having mitochondrial disorders (and that’s a big if), the bottom line is that there is an equal or arguably greater chance that it will tragically produce very ill or deceased babies.’

So, not quite the ‘end to great suffering’ that Lord Carey is hoping for.

Carey also fails to understand that these techniques are not actually ‘treatments’. The techniques aim to prevent babies being born with mitochondrial disorders, but they treat no-one alive now or who will continue to be born in the future with mitochondrial disorders.

In other words, they will do nothing for those already suffering from mitochondrial disorders or for those who will be born with them in the future. As another (qualified) scientist, Professor Stuart Newman, says:

‘This is not really a proposal for a therapy, it is a proposal for dangerous experimentation upon human beings’

Carey also fails to appreciate the long-term dangers of making changes to the germline, in that any adverse changes will be passed down all generations. Manipulating the germline has long been opposed by Governments worldwide, and by international bodies, viewed as a Rubicon not to cross. Indeed, 55 Italian MPs are so ‘profoundly alarmed’ about germline engineering that they wrote this weekend to the UK warning how dangerous, irreversible and uncontrollable such genetic modifications would be (and another 50 MEPs also wrote, to warn it may not even be legal).

But Carey clearly has complete faith in our scientists, who are ‘responsible’, ‘caring’ and ‘compassionate’. Of course many (thankfully) are, but others can tend towards overhype. He must have forgotten that in 2008 we were reliably informed by many scientists that new research on hybrids was: ‘an inherently moral endeavour that can save and improve the lives of thousands and over time millions of people.’ 223 charities urged the then Prime Minister to permit it. Yet those hugely overblown claims never came to pass, hybrid research has never worked and investors have not funded it. One gets a sense of deja vu.

Does Carey really think that only he and other proponents of these experiments hold the high ground on compassion? Does he think that people who oppose them want to see children suffering from mitochondrial disorders, which range in severity but can occasionally lead to terrible disorders, including early death? Does he genuinely think opponents do not want cures or to see the lives of those who suffer being improved?

Or is this just a way of hiding behind facetious (and false) statements, so as not to face up to thereal reasons why so many people – including many scientists – are opposed using these particular techniques on humans? Which is that they are unsafe, unnecessary, unethical and are not even treatments.

The sad irony of it though is that all the investment and pursuit of medical advances in this research – time, money , resources – for a few women would be better spent on other public health goals that would actually benefit considerably more people. In other words, this experimental research is very likely to do a lot more harm than good, in so many ways. That’s why we oppose it.

On 19 January, Nick Clegg called for a ‘zero suicides’ target among people suffering from mental illnesses. Almost 4,700 people committed suicide in UK in 2013, at least 90% of whom were thought to be struggling with mental health issues, particularly depressive or substance abuse disorders.

The results of a programme in Detroit US have inspired the Deputy Prime Minister to call for something similar to be rolled out across the UK.

The progamme in question was created by the Behavioural Health Services division of Henry Ford Health System in 2001. Since that time they have seen a steady reduction in suicide rates amongst those in their care, from an initial rate of 89 per 100,000. For the past two and a half years, the rate has been zero, compared with an expected national average of 230 per 100,000.

Whilst Mr Clegg was making his appeal, the House of Lords continued to debate Lord Falconer’s Assisted Dying Bill. Amongst other amendments, their Lordships voted down the proposal to rename the Bill ‘Assisted Suicide’. Doubtless they wished to preserve the ‘softer’ label in the best interests of the public (though apparently no such sensitivities exist north of the border with their Assisted Suicide (Scotland) Bill). Euphemisms aside, it is difficult to argue that what is being advocated is not, essentially, suicide.

The Falconer Bill is modelled on Oregon’s assisted suicide legislation. What has become clear is that the overwhelming majority of those seeking assisted suicide in Oregon are not suffering with a terminal illness but want to end their lives because of feelings of worthlessness and hopelessness. Control of physical pain and suffering don’t rank in the top five reasons given. Instead, 93% cite ‘loss of autonomy’ and 89% ‘loss of enjoyment of life’ as key reasons. In one Oregon study, 26% of those seeking assisted suicide met the criteria for depression. In Washington State, where a similar law exists, 61% of people opting for assisted suicide in 2013 gave the fear of being a burden to family, relatives and caregivers as a principal reason. In another study, of those with terminal illness who initially considered euthanasia or assisted suicide, half subsequently changed their minds.

So, in the same week we have UK politicians appealing for a zero tolerance attitude to suicide among the mentally ill and seeking to legalise assistance for suicide for the terminally ill. The irony is that, as the figures above and here demonstrate, those with terminal illness who seek assisted suicide do so primarily for mental health reasons. Those who support suicide for terminally-ill people but not for those who, for often very similar reasons, cannot face the prospect of continuing their lives must make sense of their position.

Assisted suicide is commonly argued for on the basis of autonomy, so why would we not respect the autonomous wishes of those who simply don’t want to go on living but who are not terminally ill? Doubtless many of the 4,700 suicides that Mr Clegg was referring to were beset by the same unbearable feelings of hopelessness described by those seeking assisted suicide in Oregon. How will offering assistance for suicide to one category (those with terminal illness) help to reduce the rate of suicide amongst others?

If Oregon’s statistics were extrapolated to UK, it would equate to over 1200 people annually receiving assistance to end their own lives. What this means is that passing the Falconer Bill would effectively lead to a 13-fold increase in the number of terminally-ill people who presently commit suicide (92, based on a 2011 survey of UK Primary Care Trust suicide audits). Even more seriously, it would send the message that the way to cope with life’s insurmountable problems is to opt out. It would lend institutional support to the notion that the way to combat despair, depression and an apparently hopeless future is…precisely not to combat it, but to yield to it and take the easy option.

The way in which suicide is publicly portrayed has an effect on suicide rates. The WHO international guidelines on suicide portrayal refer to over 50 published studies, systematic reviews of which have consistently drawn the same conclusion, that media reporting of suicide can lead to imitative suicidal behaviours, sometimes known as the Werther effect. By the same token, media stories about how people coped positively with suicidal feelings actually lead to a decrease in levels of suicide in the general population. The legalising of assisted suicide would send the wrong message to the public and likely produce its own form of contagion.

Nick Clegg is no doubt well-intentioned in pursuing a ‘zero suicides’ target. But if we want to see the downturn in suicide rates he is calling for then, like him, we must reject the Falconer Bill as a necessary first step.

Tucked away in all the media coverage of the three parent embryo debate, and on the same day of the vote in Parliament, was a news article from a local North-East paper, the ChronicleLive with an urgent request:

‘Egg donors needed to help with pioneering Newcastle medical technique’

And a new advert for donors states: ‘Our team at the Newcastle University is pioneering the development of new techniques to prevent transmission of diseases caused by mutations in mitochondrial DNA.

We are looking for fit, healthy women between the ages of 21-35 years old who are willing to donate their eggs. Donors will receive £500 compensation for a completed donation cycle.’

As we’ve kept warning, this new controversial research into mitochondrial disease requires eggs from women, and lots of them. As the newspaper article continues:

‘To help us achieve this, we need volunteers coming forward to donate their eggs so that we can use the healthy mitochondria and thus create a healthy pregnancy.’

‘Any women coming forward to offer egg donation would be assessed and undergo a full debriefing of what any procedure would involve.’

It sounds both simple and safe.

However genuine concern for the health and well being of the young women who will be needed to ‘donate’ their eggs for the research has been utterly ignored in all the debates. I cannot see how it is ethical to build research, already fraught with ethical and safety concerns, on women’s bodies.

In the UK most donor eggs are provided by women undergoing IVF, who can donate half their eggs in return for subsidised private treatment or, in the case of NHS patients, for an additional cycle of treatment. However it is also permitted to reimburse altruistic egg donors for inconvenience and lost earnings up to £750 per cycle.

One of the many concerns is that there is little to no peer-reviewed medical research on the safety effects of egg procurement on the health of the women who provide their eggs. This therefore makes it impossible for clinics to provide adequate information for informed consent relative to the health risks involved.

The Government admits that there is no definitive data on the number of women who have been hospitalised for OHSS after egg donation. But we do know that just under half of 864 reported clinical incidents between 2010-2012 were due to OHSS. And: ‘Each year approximately 60 instances of severe OHSS and 150 cases of moderate OHSS are reported to the HFEA.’

It is similar in the USA. Dr Suzanne Parisian, former Chief Medical Officer at the Food and Drug Administration (FDA) warns, in this short, two minute video, about the harms, risk and lack of studies done on egg donors, from both the drugs and the procedures to get the eggs: ‘There are no numbers. [The donor] doesn’t appear anywhere, in the medical literature, tracking or Government oversight…The studies have never been done.’

The lack of research and data is shocking. Egg donors need to know that long-term research simply is not there.

They know full well that money makes a difference in decision-making, as is made abundantly clear in this 30 second video clip of a young woman who was a donor. Why is it that so few wealthy women donate? Why is egg donation often targeted to students? As the interviewee says:I realise now how vulnerable I was when I was poor, frustrated, lonely, and trying to finish my education.’ It sounds rather like exploitation to me.

Now it may be argued by some that it is worth taking a risk to one’s health if there are clear personal benefits to be gained from it, such as cheap IVF treatment, however donating for mitochondrial research offers NO medical benefit to the donor.

Even the tiniest risk of complication needs to be taken seriously especially when dealing with perfectly healthy young women, who have no need to risk damaging their health and own fertility. Procedures with risk are performed on sick patients with the understanding that the benefits of the procedure outweigh the risks or the consequences of doing nothing. But in egg donation for mitochondrial research there is no medical benefit, only risk.

It is time that the HFEA, Government and the clinics doing the egg harvesting are, at minimum, held accountable for reporting adverse effects and for tracking the long-term health of egg donors. For now all we hear is a deafening silence on this.

This issue should – and sometimes does – unite both pro-life’ and ‘pro-choice’ feminists in a desire to make the health and welfare of women central to any biotech research that uses women’s bodies.

Another donor says: ‘The doctors assured me there were no long term side effects from egg donation. The only risk was OHSS which only happened in 1% they said….[but] egg donation is NOT harmless like I was led to believe. It has seriously affected every part of my life. I often cry about the loss of my friends, my family, the little person with half my DNA and my ability to have my own genetic children someday.

If you’re thinking about donating your eggs for ANY reason – DON’T. It’s not worth it.’

And if anyone is still tempted to take the risk, please listen to the women in this short video clip before doing so.

Posted by Philippa Taylor

CMF Head of Public Policy

]]>http://www.cmfblog.org.uk/2015/02/12/egg-donation-for-research-an-urgent-call-for-volunteers/feed/0It’s raining men: the cost of 34 million more males than females in Chinahttp://www.cmfblog.org.uk/2015/02/05/its-raining-men-the-cost-of-34-million-more-males-than-females-in-china/
http://www.cmfblog.org.uk/2015/02/05/its-raining-men-the-cost-of-34-million-more-males-than-females-in-china/#commentsThu, 05 Feb 2015 12:25:09 +0000http://www.cmfblog.org.uk/?p=10311

Just as the UK debates the need for a new law to prevent abortion based on gender, the Chinese Government has announced its latest population statistics.

In amongst the data is the remarkable admission by the Chinese health authorities that the gender imbalance among newborns is ‘the most serious and prolonged’ in the world.

The statistics they cite are staggering. They are so large it is difficult fully to comprehend the scale of deaths of Chinese girls and the impact this is having on Chinese society.

The Chinese National Bureau of Statistics stated that at the end of 2014 China had 701 million men and 667 million women, a shortfall of nearly 34 million women. This is equivalent to the population of Canada, Uganda, or half that of the UK.

This massive gender imbalance is a result of three decades of the one-child policy, the practice of sex-selective abortions and cultural values (in traditional Chinese culture only men can continue the family blood line and support the family).

About 13 million abortions are carried out per YEAR. (And this figure is an underestimate: a US Government report suggests at least an additional 10 million chemically induced abortions are performed in unregistered, non-government facilities).

That equates to 35,000 abortions per DAY in China.

The Chinese Communist Party boasts that it has ‘prevented’ 400 million lives (at least) through its one-child policy – more than the entire population of the US and Canada combined.

A further one million babies are abandoned every year, mostly healthy girls.

On average, 116 boys are being born for every 100 girls (the natural sex ratio is 105:100). This average figure hides the fact that six provinces have sex ratios of over 130:100 in the 1-4 age group.

In practice, therefore, 14% of men will not have a mathematical chance of ever getting married.

Sociologists predict there will be 30 million adult men by 2020 (just 5 years away) who will have no marriage prospects among Chinese women. By 2030, projections suggest that more than 25% of Chinese men in their late 30s will never have married.

What does this bachelor boom mean, in practice, for Chinese men and women?

It is hard to comprehend what it would be like living in a society where 1 in every 4 adult men you meet will have never married, and not by choice.The prospect of never finding a life partner can be one of the greatest fears in a person’s life, exacerbated by a culture (like China’s) where there is societal expectation to establish and maintain the family unit. Moreover, it is generally the poorest men (the less ‘marriage-able’) who are disproportionately affected by a marriage squeeze.

Large sex-ratio imbalances could lead to instability as more men remain unmarried, raising the risk of anti-social and violent behaviour.Historically, a surplus of young men can lead to unrest or expansionist foreign policies. Already, China’s crime rate has nearly doubled in the last 20 years.

The presence of ‘excess males’ is also one of the main driving forces behind human trafficking and sexual slavery, not only in China but in surrounding nations as well. A US Department of State trafficking report says that: ’Women and children from neighboring Asian countries… are reportedly trafficked to China for commercial sexual exploitation and forced labor…Chinese women and girls are subjected to sex trafficking within China; they are often recruited from rural areas and transported to urban centers. China is also a destination for women and girls, largely from neighboring countries, who are sometimes subjected to forced marriage and forced prostitution upon arrival.’

‘….a skewed sex ratio of 118 boys to 100 girls in China serves as akey source of demand for the trafficking of foreign women as brides for Chinese men and for forced prostitution. Women from Burma, Malaysia, Vietnam, and Mongolia are transported to China after being recruited through marriages brokers or fraudulent employment offers.’

‘Observers believed that violence against women and girls, discrimination in education and employment, the traditional preference for male children, birth-limitation policies, and other societal factors contributed to the high female suicide rate.’

It is little surprise that these sad statistics on suicide are in some ways related to pressure on women to abort or abandon their daughters, according to this research.

Also, mortality among girls is 40% greater than that of boys, when it should be instead 20% lower! This is due to discrimination against girls from an early age, ie. the ‘neglect of girls’. It is seen in lower breastfeeding rates of girls, lower attendance of girls at healthcare clinics, lower immunisation rates, poorer food allocation and the high infanticide rates of baby girls.

And now it is coming to light that the incidence of breast cancer in China has increased at an alarming rate over the past two decades, from a historical base that was low compared with Western nations. Research in 2014 revealed that abortion is significantly associated with an increased risk of breast cancer among Chinese females. One induced abortion increases a woman’s risk of breast cancer by 44%, two by 76%, and three by 89%. When extrapolating these percentages to the millions of abortions that have taken place, these are incredibly sobering statistics.

The problem with statistics is they can hide the fact that this is about millions of individual women, and about millions of personal stories behind each number. We only hear a few of those stories because they are hidden and suppressed by China’s regime, but they are harrowing.

We should not forget the role of our own country though. Western governments fund (through our taxes) the United Nations Population Fund and the International Planned Parenthood Federation. Both have worked hand in hand with the coercive Chinese population control machine for decades and continue to do so. There is little accountability or apparent will from our Government to close down such funding, let alone pressurise the Chinese Government to stop gender abortions.

China leads, and India follows with a similar gender gap. However gendercide is not confined to just China and India. Statistics and anecdotal testimonies from UK resident women reflect its incidence here.

If we do not clarify that it is illegal here, through the proposed Bruce amendment, on what moral grounds can we insist it is wrong in China?

The Weather Girls sang their famous song ‘Its Raining Men’ in 1982: ‘For the first time in history, it’s gonna start rainin’ men. It’s rainin’ men, Hallelujah, it’s rainin’ men – amen.!’

They certainly got the history right, but sadly, gendercide is a brutality and a war on women that is nothing to be celebrated, only condemned.

Tomorrow MPs in the House of Commons will be asked to vote to make Britain the first country in the world to offer controversial ‘three-parent’ fertility treatments to families who want to avoid passing on mitochondrial diseases to their children. This is final crunch time.

Last week forty scientists from 14 countries urged the British legislature to approve the new laws allowing mitochondrial DNA transfer.

The stance of scientists creates huge pressure for MPs who risk being labelled ‘ignorant’ or uncaring for objecting. But the question is not nearly as simple as it looks on first appearance. These new regulations are dangerous. No other country has officially legalised the techniques and no one can predict what the consequences for future children will be.

The Department of Health is brazenly claiming widespread public support for the measure – despite its own consultation showing a majority (62%) actually oppose the plans. In addition a ComRes poll conducted in August 2014 found that only 18% of people support a change in the law to permit the creation of three-parent children through genetic modification.

There are about 50 known mitochondrial diseases (MCDs), which are passed on in genes coded by mitochondrial (as opposed to nuclear) DNA. They range hugely in severity, but for most there is presently no cure and little other than supportive treatment (see CMF briefing paper here and previous articles on the issue here).

It is therefore understandable that scientists and affected families want research into these two related ‘three-parent embryo’ techniques (pronuclear transfer (PNT) and maternal spindle transfer (MST)), to go ahead. But there are good reasons for caution.

Here are five big questions for MPs to consider.

Is it necessary?

This is not about finding a cure. It is about preventing people with MCD being born. We need first to be clear that these new technologies, even if they are eventually shown to work, will do nothing for the thousands of people already suffering from mitochondrial disease or for those who will be born with it in the future. Parents will generally not even know that they run a risk of producing an affected baby until after the birth of the first. And it is very difficult to predict the severity of the disease in a given case. There is huge variation even within affected families.

Mitochondrial disorders are also relatively rare. Perhaps 1 in 200 children are born each year with abnormal mtDNA but only 1 in 10,000 are severely affected. It was suggested in 2001 that the proposed techniques, if they work, could ‘save’ around ten lives each year.

Last week however a JME article upped these numbers to 150. I’m not in a position to seriously dispute these figures as I don’t have access to the patient data on which they are based.

Nevertheless, to jump from 10 to 150 (via 20 and 80) is quite a jump and raises serious questions about creative accounting. How were their original estimates so off the mark, if the new estimates are supposedly more reliable? Moreover, there is a fair bit of extrapolation involved and the validity of this depends on the distribution of people with mutant mitochondrial DNA being evenly spread throughout the UK and also the USA.

Either way we are not talking about huge numbers here. There are also already some alternative solutions available for affected couples including adoption and IVF with egg donation.

Is it safe?

This is far from established. Each technique involves experimental reproductive cloning techniques (cell nuclear transfer) and germline genetic engineering, both highly controversial and potentially very dangerous. Marcy Darnovsky, executive director of the Center for Genetics and Society in Berkeley, California has argued in an piece titled ‘A slippery slope to germline modification’ that were the United Kingdom to grant a regulatory go-ahead, it would unilaterally cross ‘a legal and ethical line’ observed by the entire international community that ‘genetic-engineering tools’ should not be used ‘to modify gametes or early embryos and so manipulate the characteristics of future children’.

Cloning by nuclear transfer has so far proved ineffective in humans and unsafe in other mammals with a large number of cloned individuals spontaneously aborting and many others suffering from physical abnormalities or limited lifespans. Also, any changes, or unpredicted genetic problems (mutations) will be passed to future generations. In general, the more manipulation needed, the higher the severity and frequency of problems in resulting embryos and fetuses.

Will it work?

There are reasons to be deeply sceptical about the grandiose claims being made by scientists and patient interest groups with vested interests. This technology uses similar ‘nuclear transfer’ techniques to those used in ‘therapeutic cloning’ for embryonic stem cells (which has thus far failed to deliver) and animal-human cytoplasmic hybrids (‘cybrids’). The wild claims made about the therapeutic properties of ‘cybrids’ by the biotechnology industry, research scientists, patient interest groups and science journalists duped parliament into legalising and licensing animal human hybrid research in 2008.

Few now will remember Prime Minister Gordon Brown’s empty promises in the Guardian on 18 May that year of ‘cybrids’ offering ‘a profound opportunity to save and transform millions of lives’ and his commitment to this research as ‘an inherently moral endeavour that can save and improve the lives of thousands and over time millions of people’. That measure was supported in a heavily whipped vote as part of the Human Fertilisation and Embryology Bill, now the HFE Act. But ‘cybrids’ are now a farcical footnote in history. They have not worked and investors have voted with their feet. Ironically, it was in that same Act of Parliament, that provision for this new research was also made.

In In early 2009 it was said that there was no funding for cybrids in the UK and ironically only three research licences were granted: to Dr S Minger of King’s College London (R0180), to Prof Lyle Armstrong of University of Newcastle Upon Tyne (R179) and to Dr Justin St. John of the University of Warwick (R183).

What happened? Basically zilch!Dr St John emigrated to Australia (where such work is prohibited), Lyle Armstrong eventually switched to working with iPS cells (a more fruitful ethical alternative) and Stephen Minger left academia to work for GE Healthcare (where he promotes work with hES cells for drug screening but definitely does not work with interspecies combinations).

This is hugely relevant for the three-parent embryo debate as 223 charities, egged on by the false promises of the scientific community, wrote to the Prime Minister in 2008 to get him to reverse his decision on hybrids and not stand in the way of disease treatments. Déjà vu?

Is it ethical?

No, there are actually huge ethical issues. A large number of human eggs will be needed for the research, involving ‘harvesting’ that is both risky and invasive for women donors. How many debt-laden students or desperate infertile women will be exploited and incentivised by being offered money or free IVF treatment in return for their eggs?

A study at the Newcastle Fertility Centre, reported in Human Fertility, found that more than 20 eggs were collected from at least one in seven patients, that 14.5% of these women were subsequently admitted to hospital and nearly all reported symptoms consistent with ovarian hyperstimulation syndrome (OHSS). We do know from a recent report that just under half of 864 reported clinical incidents between 2010-2012 were due to OHSS. And: ‘Each year approximately 60 instances of severe OHSS and 150 cases of moderate OHSS are reported to the HFEA.’

How many thousands of human embryos will be destroyed? If it ever works, what issues of identity confusion will arise in children with effectively three biological parents? What does preventing those with mitochondrial disease being born say about how we value people already living with the condition? Where will this selection end? Some mitochondrial diseases are much less serious than others. Once we have judged some affected babies not worthy of being conceived, where do we draw the line, and who should draw it?

Is the debate being handled responsibly?

No. The research scientists involved have huge financial, ideological and research-based vested interests and getting the regulatory changes and research grants to continue and extend their work is dependent on them being able to sell their case to funders, the public and decision-makers. Hence their desire for attention-grabbing media headlines and heart rending (but highly extreme and unusual) human interest stories that are often selective about what facts they present.

It must be tempting for politicians to make promises of ‘miracle cures’ in years to come which no one may remember. But I suspect it is much more about media hype than real hope.

This new push is being driven as much by prestige for government, research grants for scientists and profits for biotechnology company shareholders as anything else.

Cool heads required

MPs know there is widespread public opposition to growing genetically modified (GM) crops in the UK. How much more cautious should they be about allowing GM babies to be created?

These techniques are highly experimental, unproven, known to be very unsafe (bear in mind that children’s lives will be the experiment), ineffective, costly, a waste of public money, insufficiently understood, unnecessary (only potentially helping 10-20 families a year) and will require large numbers of eggs to proceed, even for just a few families.

Genuine concerns about this new mitochondrial technology have been swept aside in Britain in the headlong rush to push the scientific boundaries.

Furthermore in many countries around and the world, and by commentators from both secular and faith based scientific backgrounds, Britain is viewed as a rogue state in this area of research.

Fiona Bruce MP has today laid a motion opposing the approval of the regulations which cuts to the chase and encapsulates the concerns beautifully:

“That this House declines to approve the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015 because many of the safety tests recommended by the Human Fertilisation and Embryology Authority Expert Panel have yet to be performed and peer-reviewed and their results made public; because no other country in the world has legalised the proposed techniques for ethical reasons; because major international bodies including the United States Food and Drug Administration have expressed the view that not enough preclinical work has been done to ensure that the proposals are safe; because they permit the genetic modification of human embryos and oocytes; because these regulations permit human embryos to be created only to be destroyed; because there are unanswered questions regarding the legality of the regulations at both domestic and international level; and because this House should not be asked to approve regulations of such ethical significance without a fully informed debate and before the results of the above safety tests are available for consideration.”

I heartily endorse her efforts.

Let’s keep cool heads and instead concentrate on finding real treatments and providing better support for affected individuals and their families rather than spending limited health resources on unethical, risky and highly uncertain high tech solutions that will most likely never deliver.

The Government’s Counter-Terrorism and Security Bill, currently being considered by the House of Lords, places a duty on specified authorities, including universities, to ‘have due regard to the need to prevent people from being drawn into terrorism’.

Who could possibly object to that, you might ask.

But in a Britain where rising state intrusion and the steady march of political correctness make frightening bedfellows eternal vigilance is required to preserve basic freedoms. And there is real cause for concern here.

Official guidance out for consultation – which closes today – sets out the Government’s view that the promotion of ‘non-violent extremist views’ is a major way individuals are drawn into terrorism.

But it defines extremism as ‘vocal or active opposition to fundamental British values, including democracy, the rule of law, individual liberty and mutual respect and tolerance of different faiths and beliefs’.

The problem is that these very same terms have already been used in various contexts to restrict and stifle orthodox Christian beliefs and behaviours such as opposition to abortion, protection of marriage as a lifelong commitment between a man and a woman, prayer, wearing of religious symbols and the preaching of the Gospel . The fact is that some people regard such Christian beliefs and behaviours as offensive and intolerant.

The guidance says universities should have policies in place for dealing with external speakers, such as ‘advance notice of the content of the event, including an outline of the topics to be discussed and sight of any presentations, footage to be broadcast etc’.

It adds that Universities should also have at least 14 days’ notice of the event ‘to allow for checks to be made and cancellation to take place if necessary’.

CMF has responded to the consultation today to express its concerns.

Whilst we affirm the importance of free speech on campus, and recognise the potential risk of misuse of higher education institutions as platforms for drawing people into terrorism, we are also concerned that the guidance as currently drafted would have a chilling effect on free speech and freedom of association, wholly disproportionate to its impact on the prevention of terrorism.

Of particular concern are the draft recommendations on ‘Speakers and Events’ (paragraphs 64-71). The draft rightly notes (paragraph 65) the duty of the university to ensure freedom of speech. However we see the provisions expected in paragraph 66 as being incompatible with ensuring freedom of speech.

Fourteen days’ notice for booking a speaker for an event is impractical for a student society such as a Christian Union that may well have an external speaker visiting every week, and where last minute changes are sometimes necessary. A small group of Christian medical students might well arrange for a local doctor to join them for a meeting on campus to discuss an ethical issue at short notice. Such events would appear to be banned by this guidance. What about a long planned event where a speaker is unwell the day before, and a replacement is brought in?

Submission of content for such an event would restrict the nature of events on campus. If a debate or discussion is held, it may be very difficult to know the exact content of such an event in advance. Is such debate to be stifled?

Institutions of higher education will not want to see their students cloistered as a result of an overprotective bureaucracy, which places unreasonable demands on many perfectly legitimate outside speakers who will be effectively censored. This guidance will perhaps unintentionally lead to an increasingly narrow spectrum of views being represented and debated on campus. Without exposure to a broad range of views and healthy debate, how can students choose their worldview in the marketplace of ideas, fight extremism and prepare for life beyond study?

‘A system for assessing and rating risks’ for such events is likely to be bureaucratic in the extreme, and expose small student societies to large amounts of paperwork, simply to be able to have any external speaker at their event.

We would urge that the specifics of these draft regulations be reconsidered.

Posted by Dr Peter Saunders

CMF CEO

]]>http://www.cmfblog.org.uk/2015/01/30/the-governments-new-prevent-duty-guidance-imposing-political-correctness-on-university-groups/feed/0Freedom of conscience in the new Nursing and Midwifery Council Code of Conducthttp://www.cmfblog.org.uk/2015/01/29/freedom-of-conscience-in-the-new-nursing-and-midwifery-council-code-of-conduct/
http://www.cmfblog.org.uk/2015/01/29/freedom-of-conscience-in-the-new-nursing-and-midwifery-council-code-of-conduct/#commentsThu, 29 Jan 2015 20:40:39 +0000http://www.cmfblog.org.uk/?p=10289

Now extensively re-written after that consultation, the new Code has finally gone public. An interesting addition to the new Code has been the inclusion of a clause on Conscientious Objection which states:

4.4 [you must] inform and explain to colleagues, your manager and the person receiving care if you have a conscientious objection to a particular procedure and arrange for a suitably qualified colleague to take over responsibility for that person’s care.

(Footnote to 4.4: ‘Conscientious objection’ to participating in a particular procedure can only be invoked in limited circumstances. Please see our guidance at [weblink to guidance on conscientious objection] for further details.)

The recognition of freedom conscience within the Code for the first time is a welcome development. However, the caveat in the footnote and the (as yet unseen) online guidance on conscientious objection raises some concerns.

Firstly, the requirement to arrange for a suitably qualified colleague to take over responsibility seems initially uncontentious, but in practice this means tacitly being involved in the procedure by making a referral – nullifying any real notion of conscientious objection.

Secondly, it is surely not appropriate in every circumstance to state a conscientious objection to a patient – certainly if one has not previously been involved with their care. To be brought in to the room only to say you have a conscientious objection to participating in a procedure seems harsh on both patient and nurse/midwife. There should surely be some more leeway for professional discretion, integrity and reasonable accommodation here.

We wait to see what the specific online guidance will contain, but we are concerned that it will be very specific and prescriptive based on the published clause and footnote.

I suspect that this has been introduced since the United Kingdom Supreme Court ruling last December in the case of two senior Glasgow Midwives who had a ‘continued objection to “delegating, supervising and/or supporting staff to participate in and provide care to patients throughout the termination process”’ on the labour ward on which they worked. The ruling effectively narrowed the definition of ‘participation’ in termination of pregnancy as defined by Clause 4 of the Abortion 1967 to mean being directly involved in clinical procedures. The midwives’ objection was based on the belief that termination of pregnancy was harmful to the woman and lethal to the child.

This illustrates the problems the legal and medical establishment have in grasping what freedom of conscience actually is and is not. It is not just about saying ‘I have decided that I believe X, and therefore I will no longer do Y’. Freedom of conscience is rather about a clear set of deeply held convictions (faith-based, world-view based or otherwise) congruent with the values and ethics primary to medicine and nursing, which value human life, human personhood, and individual human dignity.

Conscientious objection to conscription in time of war is probably the most widely recognised form. There are already well established standards for evaluating whether someone has a genuine reason for opting out of military service, allowing for a reasonable accommodation for freedom of conscience.

These standards state that there needs to be a clear reason for the conscientious objection – be it drawn from ‘universal’ ethics or from specific religious ethics – i.e. ‘I object to going to war on the grounds it is wrong to kill other people’ – this can be qualified because ‘all men are created in the image of God’ or ‘all human beings are genetic family, and it is just wrong to kill my kind’, etc. Morality is never purely individual, so these arguments stem from the wider debates and discourses of our society and culture – again be they religious or secular. We have to recognise the gravity of what the individual is being asked to do– for instance violently ending the lives of other people in war is as grave as one can get. Finally the person has to argue clearly that they hold these beliefs sincerely, and are not using them as an excuse to get out of some duty that they find unpleasant, arduous or dangerous – i.e. using conscientious objection as a smokescreen for ‘draft dodging’.

When it comes to abortion or euthanasia, we are looking at issues that have been widely and deeply debated in our society for centuries by both faith-based and secular thinkers – the arguments for and against are part of a wider, deeper public discourse. Ending the life of a fetus or a mentally competent adult, regardless of the context, is a serious issue – there is gravity in what the health professional is being asked to do.

A doctor or nurse who takes a stand on these issues needs to make it clear that their priority is care for their patient, and that they are taking a stand that may put them at odds with colleagues and superiors precisely because they hold sincere beliefs about the value of the life of their patients, and sincerely believe that the fetus in the womb or the dying patient is a human being worthy of the same respect and care as any other young person or adult.

So, in laying down new guidelines on exercising freedom of conscience, the NMC needs to recognise these strictures. Freedom of conscience is not to be exercised lightly, giving license to anyone to get out of doing something to which they have a passing discomfort or objection. Nor should the right to reasonably object on grounds of conscience be forbidden, as some are calling for. Any attempt to demand that all professionals should leave their conscience at the clinic door or get out of the profession should be strenuously resisted. Instead we need guidance that will make reasonable accommodation for freedom of conscience, genuinely helping nurses and midwives act with the greatest professional and personal integrity, whilst neither violating their deepest beliefs nor threatening the wellbeing of the lives in their care.

Many people here daily live life on the edge, so it doesn’t take much to push it over into an emergency. As Malawi last week experienced its usual annual rainfall during just three days, we found ourselves experiencing a natural disaster. Early signs of the larger disaster came as three people came to our home in Blantyre over a twelve hour period to report that their houses had collapsed the previous night. A few days later I walked around a township five minutes from our house to get an idea of how people had been affected. Almost every other house in the area had lost at least one wall, most were patched up with plastic nailed into remaining bricks, with bottle tops against the plastic to try to stop it tearing.

More dramatic reports are coming from the Shire Valley, an hour to the south of Blantyre where much of the farming land is low lying, on the banks of the Shire River. 176 people have been reported dead, with many more missing, and an estimated 200,000 have lost their homes. Schools are unable to run as people are using them for shelter and dwindling food supplies (always short at this time of year) have been lost. Electricity and water supplies – already unreliable – have been severely disrupted following the flooding.

Acute-on-chronic emergency

As I guess is often the case during emergencies in marginal environments, the problems being experienced are ‘acute on chronic’. As people generously respond to the acute situation, regular services risk being neglected. We may respond and react in a crisis, but why can’t we plan to prevent one? Planning building more carefully, using fired bricks and moving away from flood plains would all help to prevent disaster.

Away from the flooding, there are different kinds of disaster. In Malawi’s biggest hospital, where I work as a palliative care doctor, oral morphine supplies ran out last week. It’s distressing that this is unlikely to get any attention or funding despite the fact that it is an ‘emergency’ for the many people suffering severe, chronic pain.

Reflecting on some of these questions has made me feel uncomfortable and at times disappointed as I recognise my own hard heart towards those in most need. I recognise the immense privilege and protection I have from many of the effects of the flooding: my home is intact, I have plenty of food and (intermittently) water in the taps. Over recent days God seems to be teaching me that we are all more prone to responding to crises than carefully planning preventative measures. When do we pray hardest, seek wisdom from the Bible and force ourselves to take difficult decisions? It’s much more likely to be when the heat is on: when our house is leaking, when our marriage is failing or some illness hits. We are all much the same, it’s just that for those living on the flood plains a small change in circumstances can mean life or death.

God sent his Son to ‘rescue’ or ‘save’ us. We are in a crisis, and our choices will mean eternal life or death. It would be good if we all planned in a timely way, but the truth is, we don’t. I guess that is really more important.

Jackson Phiri went to sleep as usual in his small brick two bedroomed house in Chigumula, a village on the edge of Blantyre. He drifted off to sleep to the sound of the rain on the tin roof, dreaming of the bumper maize crop which would carry him and his growing family through the next year. As the night wore on his sleep became restless. The rain was falling heavily with the wind driving the rain into the outside wall beside which his three children were lying peacefully on their grass sleeping mats. He noticed cracks forming in the wall and began moving his children away from the wall. All of a sudden there was a loud crash, the children were startled from their sleep and started screaming. Panic gripped the household. The outside wall had fallen bringing down the iron sheet roof. Stefano reached for his children and gathered them all to safety in what crumbled remains of his house, giving thanks to God after checking that no one had been injured as the house fell.

Practical response – how you can help

Our palliative care team at the hospital is trying to assist those who have been affected by flooding. We are assessing the needs of patients and families who are known to us as well as working with a local community based organisation. Money raised by the EMMS appeal will assist with this and with the response at Mulanje Mission Hospital which is also in a very badly affected area.

Gifts made before 31st January 2015 will be matched by the UK government, giving more children the care they need. Your gift to help them respond to this disaster will be matched by the UK government pound for pound.

]]>http://www.cmfblog.org.uk/2015/01/28/disaster-response-malawi-faces-floods/feed/0Why abortion is not the best solution for pregnancy following rape or incesthttp://www.cmfblog.org.uk/2015/01/09/why-abortion-is-not-the-best-solution-for-pregnancy-following-rape-or-incest/
http://www.cmfblog.org.uk/2015/01/09/why-abortion-is-not-the-best-solution-for-pregnancy-following-rape-or-incest/#commentsFri, 09 Jan 2015 16:19:30 +0000http://www.cmfblog.org.uk/?p=10256

This incredibly difficult and sensitive issue has come into public discussion again as the Northern Ireland Department of Justice reviews their law on abortion. The Department is proposing a change to the current, restrictive, law in Northern Ireland, to permit abortion where the unborn baby has a lethal abnormality and perhaps for cases of rape and incest. At the same time there is an imminent legal challenge, due 2 February 2015, by the Northern Ireland Human Rights Commission to change the law to allow abortion in cases of pregnancy after rape, incest or ‘serious malformation’ of a fetus.

Most people, including some Christians, probably think that abortion is the best solution for a woman who is raped.

Rape is commonly used as one of the ‘hard cases’ that justifies not having a blanket ban on abortion. Most of us who are opposed to abortion will have been asked the question: ‘but what about rape…surely you’d not oppose abortion for that? Or ‘How can you force a woman to continue a pregnancy after rape?’

In fact, I suspect most people probably regard abortion as the most compassionate response to a woman violated by rape, who would otherwise be ‘forced’ to carry the rapists child, thus compounding her violation and prolonging her suffering even further.

Before I take on the challenge of offering an alternative view, a brief context setting is important. Most people do not realise how rare it is that a pregnancy arises from rape, at least certainly in the West, which is the context for this Northern Ireland review (unless rape is carried out repeatedly).

There are in fact few official statistics on the numbers of women who have had abortions or become pregnant as a result of sexual crime. Even the Northern Ireland Government review can only cite anecdotal evidence (p42), that that in one Sexual Assault Referral Centre in England just three women who had been raped became pregnant as a result of rape and of these only one chose abortion. Numbers of conceptions after rape are similarly hard to come by in the US, but some US data suggests that perhaps 1% of all abortions are after rape (p3).

So, in the West, not only is rape itself uncommon (thankfully), conception after rape is even less common.

Pro-abortion advocates may try to divert attention from the vast majority of abortions by focussing on rape because of its well-deserved sympathy factor. This leads to the false impression that pregnancy after rape is common, rather than very rare. Nevertheless, clearly this is not a statistical issue but a human one. Women who do suffer the trauma of rape and a consequent unwanted pregnancy are in an incredibly difficult situation with three possible options facing them. They can have an abortion, keep the baby or give the baby up for adoption.

Interestingly (and perhaps counter-intuitively to our expectations) the little evidence there is finds that most women in this situation actually choose to keep their baby.

As I mention above, only one chose abortion of three women who had become pregnant as a result of rape, according to a Sexual Assault Referral Centre in England. The Rape Crisis Network Ireland has also found that most women who become pregnant through rape or incest did not want an abortion:In 90 cases of pregnancy through rape only 17 women and girls chose to have a termination. In another anecdotal survey, of 37 women who had a rape-related pregnancy, only 5 chose abortion.

When women are actually asked to speak for themselves, their opinion of abortion turns out to be the exact opposite of what most would predict. For example, of 192 women interviewed who had become pregnant after rape or incest, nearly all (80%) who had an abortion regretted it. Over 90% of these said they would discourage other victims of sexual violence from having an abortion.

First, abortion is not an ‘easy solution’ to rape and cannot alleviate or undo in any way the crime committed.

The biggest trauma for victims is the devastating crime of rape or incest, which cannot be undone. Women who are raped, and children conceived by rape, are the two innocent victims of the crime. Abortion does not ‘un-rape’ a woman or remove the violence perpetrated against her. Research has found that those who had an abortion said it actually increased and compounded the trauma they had experienced from the rape.

For example, Patricia says: ‘The effects of the abortion are much more far reaching than the effects of the rape in my life.’

Remarkably, one woman who counsels and runs a support group for rape victims, says that: ‘A baby is the only good thing that comes out of rape.’ (p5)

Many women – not all, of course – who have been raped believe that abortion is wrong, and that if they get through the pregnancy they will have conquered the rape. Giving birth in such circumstances is a display of courage, strength and honour. Abortion, by contrast, simply sacrifices a second innocent party to the crime.

Ending the life of an innocent unborn child is not the best route to hope, restoration and new life for either. The options of adoption or fostering provide a far more positive option for women to take, if they cannot keep their baby.

Women and girls who become pregnant from rape or incest need real support and resources that meet both their needs. In many cases, however, these needs are not met because most people assume that they will choose abortion to ‘get rid of’ the problem.

Second, we should never rank the value of people based on the circumstances of their conception.

In the past, people used to value a woman based on who her father or husband was but those days (should) have long gone: the worth of children should not depend on whether their fathers were better people or not. The point here is not how a child was conceived or by whom, but that he/she was conceived. The child is not a despicable ‘product’ of rape but a unique and wonderful creation of God.

‘I think rape is horrible, but what I want to say to women out there is: you can take something that was terribly done to you, and make something good out of it. And that’s, [voice breaks] that’s me.’ Said Ken, who was born of a rape. He urges people to see that children conceived in rape are just as human, just as ‘real’, as everyone else.

Why is it that pro-abortion advocates are always saying the unborn child is really the mother’s, not the father’s, until she is raped then suddenly the child is viewed as just the father’s, not the mother’s?

Third, crisis pregnancy counselling and support can make all the difference to the woman’s decision.

Those who have been involved in counselling rape survivors agree that understanding and openness are needed more than anything. There are no ‘normal’ reactions to rape and pregnancy,although rage, panic, denial, revenge, depression and shock are all common. Many women are plagued with fears about their unborn infant and ask themselves: ‘Will she/he look like the rapist? Will I hate my own child?’ Their families are often not initially supportive of a decision not to abort and can feel helpless and confused in the situation.

Counsellors of rape survivors also know about post-abortion aftermath and that women who suffer depression, guilt and anger over the rape commonly have those feelings compounded after an abortion. The process of counselling can give women time, space, practical and emotional support and the opportunity to think about options and consequences.

One counsellor for sexual assault victims found that two-thirds of women who continued their pregnancy developed more positive feelings toward their unborn child as the pregnancy progressed. Their feelings of self esteem and contentedness improved during the pregnancy, while initial negativity, anxiety, depression, anger and fear decreased.

Abortion is not an inevitable choice. The loving support of family, friends and counsellors can make a huge difference to the outcome.

So, difficult as it appears to be, I have to conclude that abortion does not bring healing to a rape victim. And creating a second victim never undoes the damage to the first victim.

Therefore I am led to the more compassionate (and also the Christian) solution, which is the need to care and offer comprehensive support and privacy for the mother and child, at least until birth when adoption can be considered, especially if the mother is young.

Women and girls who become pregnant from rape or incest need a safe environment to consider their options, with holistic support, accurate information and resources to meet their needs.

Too often, however, they are denied this opportunity because most people just assume that abortion will ‘solve’ the problem. Some women will choose abortion, but let’s not swallow the widespread myths that most women do want an abortion after rape and that it is the ‘best’ and most compassionate response.

Posted by Philippa Taylor

CMF Head of Public Policy

]]>http://www.cmfblog.org.uk/2015/01/09/why-abortion-is-not-the-best-solution-for-pregnancy-following-rape-or-incest/feed/0Why have we become so scared of disability?http://www.cmfblog.org.uk/2015/01/09/why-have-we-become-so-scared-of-disability/
http://www.cmfblog.org.uk/2015/01/09/why-have-we-become-so-scared-of-disability/#commentsFri, 09 Jan 2015 14:55:15 +0000http://www.cmfblog.org.uk/?p=10251

When I went to see the midwife at 36 weeks of pregnancy, I did not expect to find myself leaving in the back of an ambulance.

My BP was 200/115 and there were 4 pluses of protein in my urine. My non-medical husband was bewildered and we both wondered what would happen next.

A few hours later, my BP was 160/100, but an ultrasound had shown that our baby was very small – about the size you’d expect at 28 weeks. There were no structural abnormalities, the cord blood flow and placenta seemed normal and there was no obvious cause for his growth retardation. There were many questions running through our heads.

The consultant came in to discuss this. He suggested we should do an amniocentesis for karyotyping. At first, I couldn’t even decipher the words he was using. Once I grasped what he was suggesting, I asked what the aim would be. I was stunned to hear the answer – to terminate the pregnancy if there was an abnormality.

My husband and I had previously discussed screening. We had decided not to pursue it beyond a basic ultrasound, as we saw our child as a precious gift from God. This would be true whether or not he was perfect in the world’s eyes. We believe God does not make mistakes – if our son was not entirely well, then we would trust that God knew what he was doing and would equip us to cope with the situation.

It was easy to decline the amniocentesis.

The next morning I was still hypertensive. Another consultant came to discuss the day’s plan – to try to control my BP and to continue to delay delivery for as long as possible (up to a week), so that our baby could grow larger, so that there was time for the steroids to mature his lungs and to give time for an amniocentesis. I was better prepared to answer this time around and proposed that as the baby would soon be delivered, we could wait until then to find out if there was a problem.

I remained unwell, so later that day our son was born by Caesarian Section. He was small at 1.67kg, but perfectly formed. He spent just under three weeks on the neonatal unit. Now, three months later, he continues to make good progress.

Looking back, I remain shocked that it is possible to offer amniocentesis at such a late stage in pregnancy to a woman who is severely ill and so might not be able to weigh up the risks and benefits.

I have several questions remaining:

How could it be appropriate (or indeed, legal) to even consider termination in a baby that was nearly term and appeared structurally normal on ultrasound? Even if there was some kind of chromosomal abnormality, it would be hard to argue that there was a serious disability to justify late termination in the presence of a normal scan.

How would termination at this stage have differed from infanticide? Less than 24 hours after amniocentesis was first suggested, our son was admitted to the neonatal unit. He only required minimal support.

It seems deeply ironic that he would have been offered full intensive care support on a day where someone had considered killing him.

I wonder where our profession and society has got to. Have we become so scared of disability that even the slightest possibility of it must be excluded at any cost?

The Bible teaches us that, since sin damaged the world at the fall, creation has been full of suffering – it is no longer perfect (Romans 8:18-24). In the same way, we are not perfect, but have all sinned. Despite this, God chooses to love us and to call us his children, if we know him. This is grace beyond measure.

When he is kind enough to give us children, he asks us to love them in the same way – not because they are perfect, not because they deserve it, but because they have been given to us to love. He has lavished his great love upon us despite our failings and we are called to share some of this love with them, in whatever circumstances we find ourselves. We do this knowing that he has promised finally to make us (and our children) perfect, just as he is.

‘See what great love the Father has lavished on us, that we should be called children of God! And that is what we are! The reason the world does not know us is that it did not know him. Dear friends, now we are children of God, and what we will be has not yet been made known. But we know that when Christ appears, we shall be like him, for we shall see him as he is. All who have this hope in him purify themselves, just as he is pure.’ 1 John 3:1-3